mctd Community Group

mixed connective tissue disease

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Muscles & Bones
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Anemia

Jrod
Jrod

Good morning, I was diagnosed with MCTD at Cleveland Clinic in Feb of 2016 after about 2 years of contending with this disease/ disorder. I have found very little help from local rheumatologist and for the last 6 months or so I have only been basicly trying to keep symptoms under control (hypertension, reflux, fatigue, Raynaud's, pain and so forth) with the assistance of my primary physician, an internist. I chose for the time to stop all immunosuppressive therapy, it was doing more harm than good, I saw little to no improvement. The latest problem I have noticed is that my hemoglobin is lingering around 9-10.  With the fatigue already associated with this disorder, I'm bout wiped out. No bleeding can be found after upper and lower endoscopies.  Mayo Clinic info states up to 70 % of MCTD patients suffer anemia, but doesn't explains the mechanism.  Do any of you folk have an answer as to "how" we become anemic? If you have sources you can direct me to, I would be greatful. Two things I am sure of above all else: this disease is a booger, but God has still blessed me beyond measure!

Jackmaraner
Jackmaraner
I just had labs to see if my liver was being affected by my many meds. The news was good however I was told i have mild anemia. My rheumatologist says not to stress and that we'll keep watch over it for now and retest in 6 months. I was hoping someone else had experienced this and could tell me how yours turned out.
Jrod
Jrod
Well, since I wrote my original post the anemia remains persistent. I am now under the care of a hematologist to help deal with that issue. I have very low serum iron levels, 4 to be exact, in spite of big oral doses of iron supplements. My iron level was 4 before the supplements were prescribed. My follow up with the hematologist is in a couple of weeks. I will not be surprised if she informs me that it is a malabsorption issue and starts me on iron infusions. We will see. Meanwhile, I will rejoice in the day the Lord has made- He is my consolation. Happy Easter!
FifiDarling77
FifiDarling77
Hello all....I'm so happy to have found this group! I was diagnosed with MCTD just recently, and my next step is to see a rheumatologist. Jrod, I'm also in the Cleveland area and was planning on going to the Cleveland Clinic as their rheumatology dept is supposedly 3rd in the nation and the hematologist I saw recommended that I go there rather than at the hospital she practices at....after reading your post I'm not so sure. I'm just so frustrated and feel like I'm not getting anywhere. To complicate things further, I also have Crohn's Disease (diagnosed about 10 years ago, and getting that diagnosis was an ordeal too). Plus I'm antiphospholipid positive, have an elevated D-Dimer and am severely deficient in Vitamin D. I've also recently been diagnosed with asthma, and never had breathing problems prior to now. I feel like a hot mess and only progressively getting worse! I live an active life and need to get back to it....what medications have been most helpful with the least side effects so that I know what to ask for during my next consult? Thanks so much!